Thursday, February 4, 2016


Gwen Hartley’s 19-week sonogram was normal. Her baby girl, her second child, was going to complete her storybook life. She’d married her high school sweetheart, they already had a healthy son, a house and a dog.

When Claire was born, Hartley looked adoringly into her daughter’s big eyes and remembered thinking that she’d forgotten how tiny a newborn’s head was. Then the doctors whisked her baby away. Something was wrong. Something that couldn’t be fixed.

After a series of misdiagnoses, the Hartleys, of Kansas, were told Claire had microcephaly, a serious birth defect that causes babies to have extremely small heads and brains, and, in her case, made it unlikely she would live beyond a year. Almost five years later, Claire was defying the odds and, although she couldn’t speak or walk or even sit upright, she was a happy and vibrant child. The Hartleys felt ready to get pregnant again. Rounds of genetic testing had not revealed anything to suggest Claire’s microcephaly was anything but an anomaly.

Then, at their 26-week sonogram, the doctors told them their third child’s head was too small, five weeks behind what was considered normal, and that she certainly also had microcephaly. Hartley remembers her first impulse was to laugh, then she and her husband, Scott, broke down and sobbed.

For the first year of Claire’s life, Hartley said, she and her husband lived in a state of perpetual panic and sadness. The vision of their perfect life had been shattered, and they had no idea how long they’d have their baby girl. But Hartley’s priorities shifted in those 12 months. Perfect was in the eye of the beholder, and to her, she still had the perfect family. She was going to stop mourning the life she didn’t have and celebrate the one she did.

When Lola was diagnosed, some of those negative thoughts seeped back. Knowing the life expectancy of these children was still short, she worried about how she would bury two children someday. Recalling these feelings now, Hartley started to cry. “It’s hard to think about that,” she said, her voice catching. But she doesn’t let those fears stay around too long.

“This is the baby I’m supposed to be a mom to,” she said. “I would be missing out on a gift that had been given to me.”

Claire and Lola have severe forms of microcephaly coupled with other serious health complications. They both have dwarfism, spastic quadriplegia cerebral palsy and epilepsy.

But they still have traits of girls their age. Hartley said Claire is a typical teenager who can give her some attitude and a little side eye. Claire is working on raising her arm and learning to crawl. Lola can make choices with her nose. She will sit on the edge of someone’s lap and lean forward and tap her nose on an object in front of her.

“She’s learning that she has a say in this world,” Hartley said.

A few years after Lola was born, Hartley, who had been an elementary school teacher, but chose to be a stay-at-home mom after her son was born, decided to start a blog. “The Hartley Hooligans” is filled with stories and pictures of her family and their daughters’ development. The posts are funny, poignant, raw and honest.

“They called it a ‘terrible’ birth defect,” Hartley said. “I don’t look at them as having terrible birth defects. I look at them as gorgeous. To me that is not a horrible, hideous birth defect. It’s no less beautiful to me.”

That people would look at her children and say, “Let’s never let this happen to anyone ever again,” is a “little bit hurtful,” she said...

“I’m sad they have to go through this, but they have it, so you can optimize the heck out of that kid’s life,” Hartley said of other parents whose babies have microcephaly. “We are all happy. We love our lives.”   Courtesy of a colleague

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1 comment:

  1. In the panic over Zika virus, major media outlets are calling kids with microcephaly ‘misshapen,’ ‘heartbreaking,’ and ‘dystopian.’ The exact opposite of my joyful, funny, vivacious son…

    I adore Edmund, my kid with microcephaly. I shouldn’t need to say that. In general, moms loving their kids is a given.

    I am all too aware, however, that people believe he’s an affliction who must be borne, rather than a source of joy and laughter and an occasional pain in the ass—just like my two typical kids.

    The endless pounding of Zika stories, and the descriptions of the grim futures that await the families of microcephalic children, chip away at a façade I’ve built by surrounding myself with friends, family, and a community who value and love my son. On a recent morning, I had the pleasure of reading this lede in The New York Times: “A baby with a shrunken, misshapen head is surely a heartbreaking sight.”

    If you are a parent, I ask you to sit back and think about that for a second. Think about one of your kids being described in those terms in the paper of record. Terms that are usually used for the hulking villain of a gothic novel, not an infant. And further as “a heartbreaking sight.”…

    Edmund may be many things, but here’s what he isn’t: a heartbreaking sight.

    This isn’t because he is one of the 15 percent of microcephalic children who develop typically. His microcephaly is part of a cluster of medical problems that stem from a rare genetic syndrome, Cri du Chat syndrome.

    He has multiple intensive needs. He’s non-verbal, and communicates with a few signs. He uses a wheelchair and requires a feeding tube for nutrition.

    Rather, it’s because I love him for the person that he is, not the skill levels he achieves.

    Then there’s the coverage of abortion. As it happens, I’m pro-choice. I think women should be legally permitted to be able to choose to have an abortion for any reason.

    However. The negative aspects of disabilities can be ameliorated or erased if disabled people and their caregivers are given access to technology, services, community inclusion, and good education.

    A friend of mine, Heather Ure from Redmond, Washington, is an autistic mother of disabled and typical children. As she once told me, it’s a society that has access for and inclusion of disabled people, and has good health care (including reproductive care), that can weather a crisis like Zika.

    So it’s a punch in the gut to read, as I did in Jezebel, that a “microcephaly diagnosis might require” (emphasis added) an abortion. I’m pro-choice, after all, not pro-eugenics.

    The Jezebel piece refers to the coming world with more kids with microcephaly being born due to restricted abortion access as “totally fucking dystopian.”…

    Look, it’s not like I don’t know why all of you are terrified. I didn’t ask for a microcephalic baby, and I was devastated when I got one. I thought it was the worst thing that had ever happened to me or my family.

    That’s because I didn’t know what disability was like.
    When I’ve objected to cruel, panicked Zika coverage, people tell me I don’t know what it’s like, because these microcephalic children are being born in places with fewer resources.

    Of course it’s better for Edmund and easier for our family because I live in a place with more resources! This is why we can and should turn our attention not to fear-mongering but to help creating places where children with disabilities can thrive.

    Edmund taught me that disability is not hell on earth for a family. It’s not constant misery. In our family, it’s love and smiles and buildings without wheelchair access and too many appointments and laughter and pulling his brothers’ hair and way too many toys all over the floor that he refuses to pick up.
    Courtesy of Doximity